darren mccleery said...
i have had crohns disease for 10 years i have been on remicade and imuran for the last 3 years. i had tests done for celiac disease,the blood tests were positive and the stomach biopsis were negitive so my consultant said i dont have it and has not put me on a gluten free diet, but i decided to go on to a gluten free diet my self because gluten was making me feel tired and sleepy.does anybody know if they think i am celiac or just cant tolerate gluten.i am going on holiday and i cant see me sticking to a gluten free diet . should i be worried or will i be alright because i am taking drugs that supress my imunsystem anyway.
If your blood tests were positive but your biopsy was negative you still have celiac, IMHO. BTW, they should NOT have biopsied your stomach...the biopsies are supposed to come from the small intestine. Of course, I assume that your doctor knows this.
What you need to know is that both the blood tests and the biopsies give LOTS of false negatives; here is a great explanation as to why
there are so many false negatives from the biopsies (from another celiac forum):A negative biopsy really doesn't prove much.
A number of samples are taken from the lining of the upper small intestine. The number is usually rather small. The damage may be spotty in many cases.
An analogy which may help understand the accuracy of the biopsy follows. It is graphic, but effective.
Imagine that your front lawn is 25 feet wide and 10 feet deep. That is 250 square feet of grass. Now imagine that you go onto your lawn and choose, at random, 12 3-inch square samples. In none of those samples, which total less than 1 square foot out of 250, do you find any dog feces. Well, then, you can declare that your lawn is free of dog poo, can't you? Of course you can't.
A negative on the biopsy does not prove that there is no damage, it only means that they did not find any in the small sample. The fewer samples taken, the more likely it is that damage will be missed. Most times a lot less than twelve samples are taken, and they are all taken from within the first few inches of the small bowel.
In any case, if you have celiac disease, you MUST follow the gluten free diet....it's the only real treatment for it. Celiac disease, if untreated, can actually lead to many other illnesses, including other autoimmune diseases and even bowel cancer. Just because you're on immunosuppressants does not mean you will be OK eating gluten.
If you go to my blog (see signature) you can read about
our recent vacation in Oregon and how we stayed gluten free while traveling (my entire family is gluten sensitive so we are all gluten free).